My Life as a Semicolon ; ): January 2015

Tuesday, January 27, 2015

You Never Know

As I hope I've made clear in the past, I'm not a fan of New Year's resolutions. Yes, I could stand to exercise more and lose [quite] a few pounds . Yes, I should finally write my book proposal (I've got my Complete Idiot's Guide just waiting to be cracked open); but no amount of arbitrarily-timed, self-critical promises will make those things happen. Nevertheless, I have accepted a motivational motto for 2015: "You never know..."

I like this phrase for a number of reasons, not least of all its varied interpretations and/or meanings:

1. You Never Know = “Life is what happens to you while you're busy making other plans.”
This quote was written by Allen Saunders but popularized by John Lennon.
2. You Never Know = "Don't Judge a Book by its Cover"
3. You Never Know =,"A true genius admits that he knows nothing." So said Albert Einstein. Now, I'm no genius, but I am comfortable enough in my ignorance to admit that I possess a pittance of certainty about the world. It's quite liberating really.

My focus is behind Curtain Number 3.Versions 1 and 3 are two sides of the same coin, but 1 is more about stealing yourself against unexpected mishaps and 3, for me, is more about being open to happy accidents and unforeseen opportunities. Unfortunately, it's only just now that I've realized how Forrest Gump it all sounds. Though I'd take a box of chocolates if offered.

I'll use #2 as a reminder that everyone has reasons for their choices, often unrevealed and not to be judged. I know that -- especially with my kids -- I often jump to conclusions about their intentions and/or lack of consideration. And you know what happens when you jump to conclusions -- You make a jay out of con and clues. No, I don't know what that means either. It's just something I do, because Tony Randall made it look so compelling.

From the outside looking in, "You Never Know" #2 highlights the invisibility and misdirection of my brain injury: My cane and limp say, "this guy has a bum knee." My reliance on one-handed living says, "this guy must have dislocated his left shoulder or elbow or broken his hand down at the mill during the Industrial Revolution." Probably, people don't even notice me not using my left hand. But it's all a good teaching moment for me when they do, just to emphasize our over-reliance on the jellyfish in our heads.

Recently, my department had its post-holiday holiday bowling party, which was a good reminder of all three variations of, "You Never Know":
1. In September 2010, no amount of planning could have fully prepared me for the fact that I'd be attending the January 2011 party in a wheelchair. That said, having that experience to reflect back on makes the last two outings --during which I've actually bowled -- that much sweeter (even if my score went down this year).
2. While my co-workers were, as usual, hugely supportive, it was also useful for me to vaguely emphasize one of the less obvious effects of my disability: Because the leg brace I wear has a large foot bed, I had to rent two different size bowling shoes. The bowling alley was very accommodating about that, whereas buying shoes is more complicated for me: Either I have to buy two pairs of the same shoe in two different sizes, or I have to buy one pair that's larger than my actual size and pad my right shoe (the route I've taken with the three pairs I've bought since getting the brace).
3. I certainly could have legitimately opted out of bowling altogether, but it was nice to see how it feels. What struck me more this year than previously was how much my muscle memory wanted to kick in, even though my brain still can't remember how to control the muscles. There's a lot of grace and rhythm in bowling, neither of which I have anymore. While the picture in my head told me to stride up to the line (better still, use Fred Flintstone's twinkletoes technique), holding the ball in two hands as if presenting Simba to the sky, and synchronize a smooth backswing and toss with my last step (thumb audibly popping out of the hole as my right foot elegantly crosses behind my left), the reality was a slow shuffle from the ball return to the line; a dead stop; a pause until the moment it felt right; and finally a chuck down the lane (no Fred Astaire-inspired leg cross). Are there actually places that let you take free practice throws? Because I was already through one game and too tired for a second by the time I realized I should have shuffled to about three feet from the line, stopped, then tried taking one or two long steps before throwing. Next time I'll have to try that. Maybe I'll break 100.

So in 2015 I will continue stepping outside my comfort zone and trying new things. 2014 was a good test of that physically, especially with my recumbent tricycle. For Christmas, I got snowshoes, which I'll actually use if we ever have snow and reasonable temperatures at the same time. I/we also received a sleeping bag, tent, and camping cot for Christmas. Very subtle, Jamie. Nothing says family bonding better than spending time together in an uncomfortable, confined space. No, I've never really gone in for camping. My most memorable experience was the fall of 1993, sleeping in the shadow of Mt. McKinley, where I had a dream that spanned two years and a war. Obviously, it was one of those dreams that lingers and continues to feel real long after waking. They say Denali has its own weather system, and it was working overtime on me that night.

My other You Never Know #3 for me this year will focus on friendships. I've already reconnected virtually with a couple people I knew Back When (1990ish) in England. I'm forging new friendships at work and in my support group. I also just returned from a re-bonding weekend with my Best Man, who is about to have another baby. And if there's ever a You Never Know, it's The Second Child. The First is a ruse to make you believe you know what you're doing as a parent. The second is a heavy reminder that you haven't got a clue.

"You Never Know" also means embracing unpredictable consequences. Who thought the same Industrial Revolution that mangled my hand would lead to Global Warming? Maybe that's a bad example, since the reaction to that discovery should be one of remedy, not acceptance. Nevertheless, I won't be surprised in twenty years when we learn solar panels are extinguishing the Sun.

Growing up in NJ, I couldn't have predicted I'd end up in Maine. I remember writing a college application essay as if it were Page 84 of my autobiography. Pretty sure it said nothing about Maine, strokes, or Knowledge Management. I'm sure it would be hilarious to read now, if I only had a 3.5" floppy drive. And my 1987 disk.

We shall see where the time takes me. And maybe I'll lose some weight in the process.

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My Life as a Semicolon ; )

Tuesday, January 27, 2015

You Never Know

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Activities	Immediately after Stroke(early Oct. 2010)	When I left MGH/arrived at NERHP(mid-Oct. 2010)	When I left the rehab (12/21/10)	Now (02/21/13)
Eating	I started with an an NG-Tube, which was inserted during my original surgery and soon was given a G-tube, during a separate surgery. My primary source of nutrients was called Jevity, which is not as much fun or tastyas it sounds.I actually have no idea what it tastes like, but it looks and smells like a combination of coffee milk and Yoo-Hoo	Still on an all-liquid diet of Jevity through my feeding tube.	Early in my stay at the rehab, I took a Modified-Barium-Swallow test with my speech therapist in order to confirm that the stroke had not damaged my ability to swallow or my gag reflex. After passing the test, I was allowed to eat solid food, though even that came in stages. For instance, I rememberthe first group of foods were "mechanical soft" and I drank "nectar thick" liquids"	I try to eat a healthy diet and have no specific restrictions.
Therapy	approximately one hour a day of OT and PT.	approximately three hours a day of OT, PT, and speech therapy (speech encompasses talking, drinking, eating, and cognitive functions.	approximately three hours a day of OT and PT. I was discharged from speech therapy relatively early on, once it was determined that my cognition, speech, and swallowing were relatively fine	After leaving inpatient at the rehab, I began outpatient OT and PT twice a week and also had in-home OT and PT twice a week. after receiving the results of my neuropsych evaluation, speech therapy was added back in. I then had to eliminate some therapy in order to free up time for my return to work. In 2012 I did no formal OT or PT but tried other forms of therapy like chiropractic and Feldenkrais. I am also going to try craniosacral therapy. I've regularly seen a psychologist throughout my recovery.
Walking	None	None	walking with close supervision and the support of an AFO brace and quad cane	walking independently, with the support of a KAFO brace and a straight cane, now equipped with a standing tip(which I love). I periodically walk without cane or brace, when the occasion calls for it (like carrying something).
Toileting	during my original surgery, I was given a Foley cath– an internal catheter – which remained in place for quite a while. It think after not producing enough in my catheter bag, I was given another internal catheter – this time a Straight cath. They can only stay in for relatively short time,I think, so I was granted the opportunity to try aTexas Condom Cath. After that proved unsuccessful, I was given what was simply called a Urinal, but which I referred to as my "pee jug"	Urinal	urinal at night, toilet during the day	all toilet all the time; no assistance required
Bathing	bed/sponge baths	bed/sponge baths,though after about two weeks inpatient at the rehab, I started showering periodically with assistance	showering, seated, with minimal assistance	showering, seated, with no assistance, standing with some assistance
Dressing	maximum assistance required	maximum assistance required	some assistance required	no assistance required, except with some jackets and zippers
Balance	could not stand or sit up straight	could not stand or sit up straight	could stand and sit for short periods of time	can stand and sit without assistance for relatively long stretches of time
Left Leg/Foot	no movement	no movement	large movement from hip and quad.weak in hamstring. no movement in ankle or toes	still weak in hamstring, but much stronger in leg overall. Some ankle motion, but nothing in my toes.
Left Arm/Hand	no movement	no movement	large movements from the shoulder and bicep. Some hand grip. No finger extension.	similar to when I left the rehab, though large movements are easier and my grip is a bit stronger.
Speech	Little and/or slurred	slurred Jamie often remarked that I had a "flat affect."	relatively clear.	most people say they don't notice any issues with my speech, but I still notice some slurring when I raise my voice (which, of course, never happens in a house with two young boys) or when I try to string together too many thoughts or syllables at once; I can't seem to whistle like I used to, my pitch is a little off when singing; and I can't curl my tongue anymore.
Pain	negligible	negligible	negligible	headaches periodically, but no general pain
Aneurysm	primarily removed	no change	no change	as far as we know, no change
Seizures	gone	no change	no change	gran-Mal seizure while sleeping, in August 2012.
Skull	a portion was missing (on purpose)	no change	cranioplasty completed	scars are healing well. There are some "irregularities" in how the plates have healed, especially with the plastic skull flap. That's not unusual. Sensation is returning to areas of my scalp where nerves were severed during surgeries. Sometimes this can cause odd sensations, but not pain per se. I do have some pain when yawning.
Medication	antiseizure meds,Heparin anti-clotting shots to my belly (which is standard for bedridden patients), beta blocker for high blood pressure, though, that was primarily a reaction to my heart episode, not an actual issue with high blood pressure; Lipitor to lower cholesterol, though, that also was prescribed primarily in reaction to my heart episode and the stroke. Baclofen for spasticity.	no change	no change	I'm no longer on the beta blocker, since my blood pressure has stabilized. I've also reduced my Lipitor intake, because my liver enzymes were not reacting well with it.Since I am no longer in bed as much, I did not need the Heparin shots once I returned home. Anti-seizure meds were increased after my 2012 seizure. Lexapro for mild depression.
Heart	some sort of heart episode had occurred, but no direct cause – other than brain surgery – was identified	no change	chemical stress test did not identify any long-term damage caused by heart attack or risk factors for future concerns	no change
Falls	None, though if I had been left alone, I certainly would've fallen over	same	no falls during my time at the rehab, though, I had a couple close calls during transfers from my wheelchair, or when trying to move too quickly	I've had a few falls at home, up through 2012, but have also regularly practiced getting up from the floor during PT. I have to be cautious but not fear falls
Wheelchair	the only way I could be moved was by wheelchair or gurney, primarily gurney	same	I did use the wheelchair for "long"trips down the hall.	When first at home, the wheelchair was the easiest way to get me around or in and out of the house and car. I no longer use it except on excursions that would require a great deal of walking, such as at the airport.
Stairs	None	same	some use of "practice stairs." And actual stairwells, always with supervision	when first at home, I stayed on the ground floor of the house at all times, but now go upstairs to sleep and shower, as well as down to the basement for exercise. I still mostly go one step at a time (as opposed to stepping "reciprocally"), but only need supervision when there is no railing on my right side – up or down. Regularly exercise at work by reciprocally climbing three flights of stairs.
Driving	none	same	same	Car modified for one-handed operation, I got my license back at the end of January 2013.
Sleep	this fight, the noise of the hospital, I generally slept okay. I was pretty exhausted and at times still groggy from anesthesia.	same	I went through some periods of sleeplessness due to noise in the rehab and was given some sleeping aids, which helped.	I've been sleeping pretty well, aside from typical interruptions of young children. Diagnosed with mild sleep apnea in February 2013.
Work	none	none	none	From 7/11 through 12/11, ramped up from part-time at home to fulltime from home . From 1/12-6/12, ramped up from part-time in the office to fulltime in the office, which continues.
Mood	upset by my circumstances but generally positive	same	same	I think working has given me a boost to a certain extent. I try to be positive, though certainly get frustrated at times. I'm also on Lexapro, in part because a study showed a connection between SSRIs and neurological healing. At worst, the study found that patients were less depressed and more motivated to work toward recovery.
Exercise	Little to none	same	I considered all therapy to be exercise.	Again, therapy has been exercise. Without formal therapy, I do regular stretching and have recently added a treadmill to our inventory of equipment. This will hopefully help improve my stamina in preparation for time in the office, as well as help me focus on walking pace and form. I've also been using ourWii balance board, which includes fun, but safe ways for me to put my balance to the test.
Tactile sensitivity	slightly diminished– if tested subtly, for instance, with a Q-tip, I could not easily identify which finger on my left hand was being touched.	same	improved	relatively normal, though I am somewhat hypersensitive to heat and cold.